Mattie Miracle Walk 2023 was a $131,249 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

January 26, 2011

Wednesday, January 26, 2011

Wednesday, January 26, 2011

Tonight's picture was taken in August of 2003. Mattie was 16 months old and had just begun to walk. With his level of energy, walking was a mixed blessing. I snapped this picture of him while scooting about the living room. What I love about this picture was his expression of surprise and awe. He was staring at his basket of toys and books, and apparently he found something there he wasn't expecting to see! It was hard to capture these priceless moments with a baby (because they move so fast, time moves quickly, and as a parent you are exhausted), but I tried. As I look back at these photos that I post each day on the blog, I give myself credit now, because even as a mom who felt scattered between being a parent and working, I had the where with all to understand that these moments in Mattie's life would be fleeting, so I better capture them. Of course, I did not know just how fleeting they would really be, nor how valuable these photos would become to Peter and I, until now.


Quote of the day: Every one can master a grief but he that has it. ~ William Shakespeare

Another brilliant quote from Shakespeare, who understood that those observing a griever may see hope, brighter days ahead, and a future for him/her. Naturally for the person grieving it isn't as simple. After all, he/she is the one who has to actually be immersed in the thoughts, feeling, and memories and therefore mastering a new way of living seems at times impossible.

I had lunch today with my friend Margaret. As many of my readers know, Margaret was Mattie's first preschool teacher, and the person who assigned him the symbol of the Moon. It was within that first year of preschool that Mattie's friends referred to him as Mattie Moon! A name that stuck with him even after preschool.

Margaret and I had a lengthy chat today about the Time magazine article I wrote about last night. As I promised I will be continuing that discussion for the next five days. I think what I found fascinating about Margaret's observation today was she could feel a "spunk" or a passion in my writing, which reminded her of the person I was prior to cancer taking over my life. She brought up an excellent point, in the sense that I typically write about personal issues on the blog, but this willingness to take on this article over the course of this week is different. Perhaps even something I couldn't do 6-8 months ago. Yes the article covers the topic of grief, and yes it helps me process Mattie's loss, but it also helps me to do something on a broader scale. The scale she is referring to is that of my former role, an educator. Perhaps in my own way I have decided to make a statement to my readers that could potentially impact how you view your own thoughts and treatment of grief. Though Konigsberg's article is NOT a research or empirical study, it is an article nonetheless, which I am trying to dissect, understand, and explore. Not unlike what I always did in my professional life. However in addition to making a statement about grief and loss, I am also advocating for my profession. Another thing I was known for prior to Mattie's illness. After Mattie developed cancer, my professional identity became non-existent. Though I freely admit that I NEEDED and used my skills each and every day to fight and advocate for Mattie! I can be the sweetest person, but if I am responsible for you (like Mattie was), and I perceive others not understanding and working on my timetable to answer my questions as it pertains to the person in my care, then I will be your worst nightmare.

As Margaret and I talked about grief, she brought up an interesting point. Grief is very fluid, and even while we were talking to each other, we reached peaks and valleys of emotions just in two hours. These ups and downs influence how we will then feel throughout the rest of the day. The point is, our experiences and interchanges in a given day impact our grief and naturally our grief impacts how we take in the people and things around us. In other words, grief is complex! Therefore keeping all this in mind, how is it possible to expect someone who is grieving to follow and progress through stages of grief in order to heal? The answer is.... IT ISN'T! Grief doesn't move in a linear or stepwise fashion because so many outside and internal factors regulate the healing process.

Last night, I explained to my readers that I read the following article, Good News About Grief: As the nation mourns those killed in Tucson, a new look at the science of loss shows we're more resilient than we thought. This article was featured in Time magazine (January 24, 2011, pp. 42-46) and was written by Ruth Davis Konigsberg. I have been reading more about the author on the Internet and she admits that her "book did not grow out of personal experience, but rather a journalistic desire to make sense of a model for loss that doesn’t seem to be serving us particularly well." I can appreciate her desire to investigate Kubler-Ross's model and I can even admire the fact that she is pointing out how ineffective such a model really is. What I take issue with is her strong stance on the ineffectiveness of expressing feelings and thoughts about loss. I am not implying this must be done with a professional, because I do think death is a universal concept, and therefore with the right support network, great understanding can be achieved. But an outlet of expression is very needed, and stuffing feelings and thoughts is just not effective. It may be in the short term, but as my colleague would always say, in the long term, these stuffed things will come out sideways. Sounds funny, but it simply means that these issues will resurface and when they do they could be compounded by different things.

Below is the first myth of grief that Konigsberg highlights in her article. I typed out the myth for you so you could read it for yourself.

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Myth No.1 We Grieve in Stages

One of the reasons that the five stages became so popular is that they make intuitive sense. "Any natural, normal human being, when faced with any kind of loss, will go from shock all the way through acceptance," Kubler-Ross said in an interview published in 1981.

Two decades later, a group of researchers at Yale decided to test whether the stages do, in fact, reflect the experience of grief. The researchers used newspaper ads and referrals to recruit 233 recently bereaved people, who were assessed for "grief indicators" in an initial interview and then in a follow up some months later. In the Kubler-Ross model, acceptance, which she defined as recognizing that your loved one is permanently gone, is the final stage. But the resulting study, published in the Journal of the American Medical Association in 2007, found that most respondents accepted the death of a loved one from the very beginning. On top of that, participants reported feeling more yearning for their loved one than either anger or depression, perhaps the two cornerstone stages in the Kubler-Ross model.

Skepticism about the stages has been building in academia for a long time, and yet they still hold sway with practitioners and the general public. A 2008 survey of hospices in Canada found that Kubler-Ross's work was the literature  most frequently consulted and distributed to families of dying patients. "Stage theories of grief have become embedded in curricula, textbooks, popular entertainment and media because they offer predictability and a sense of manageability of the powerful emotions associated with bereavement and loss," says Janice Genevro, a psychologist who was commissioned by a Washington nonprofit now called the Center for Advancing Health to do a report on the quality of grief services. In her 2003 report, Genevro concluded that the information being used to help the bereaved was misaligned with the latest research, which increasingly indicates that grief is not a series of steps that ultimately deposit us at a psychological finish line but rather a grab bag of symptoms that come and go and, eventually, simply lift.
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I believe we need to take a step back from what Konigsberg is suggesting about Kubler-Ross's final stage, acceptance. Kubler-Ross created this model for people who were DYING. Therefore, accepting the fact that one is indeed dying would be the ultimate indicator, I suppose, to adjusting to one's own mortality. It is other professionals who have applied Kubler-Ross's model to those who are grieving. None the less, despite the simplicity of the word acceptance, I do not think any grief professional would simply think that accepting the death of a loved one translates into physically accepting that the person is dead. Certainly this is a component of acceptance but not the full significance of the word or concept. With traumatic or complicated grief, the actual physical acceptance of the death of a loved one doesn't occur immediately. But for the most part, with typical grief, many of us accept from the outset that our loved one is nor longer physically part of this world. I would instead encourage one to think of acceptance as not only the physical acceptance of the loss, but the emotional and long term acceptance of the loss. It is the later that is particularly challenging to work through, and I have to say I have read and heard stories from other parents who have lost children ten or more years ago, who are still struggling with acceptance. I would say you adjust to the world without your child, but you may not necessarily accept it. So I have to wonder how the word, acceptance, was operationalized in the study Konigsberg cites from the Journal of the American Medical Association (2007). I also would LOVE to know how many of these subjects in this study lost a child. Because for the most part Konigsberg discusses studies in her article that pertain to the death of a spouse. I am not implying that this isn't painful by any stretch of the imagination, but I am implying that the death of a child is not natural, and that produces many obstacles to acceptance!

What is a glaring issue in this entire article is the blurry line about what constitutes a loss. Naturally for me and my blog readers, the death of Mattie, my seven year old, from osteosarcoma is at the forefront of our minds. But Konigsberg opens up her article (which I highlighted last night) with a listing of all the many kinds of losses in our culture. When she mentioned LeBron James' abandoning the Cleveland Cavaliers for the Miami Heat as a loss, I almost fell off my chair. Please do not tell me that an overpaid athlete who decides to leave one team to play on another constitutes a LOSS! A loss in which we even try to apply Kubler-Ross's stages!!! If this is indeed true, this speaks volumes about our society. I am sure Kubler-Ross is doing somersaults in her grave knowing that her model is being discussed and applied in such a trivial matter. This may be an upset for basketball fans, but honestly is this really a LOSS? Something to grieve over? Forgive us Elisabeth (Kubler-Ross)!

My mom and I were chatting back and forth about this today, and I copied a paragraph she wrote me that addresses different losses, and how the loss of someone close to you is SO different from perhaps a national tragedy such as September 11. My mom happens to be correct, and the grief research and literature would actually back up her sentiments. My mom wrote, "One can feel genuine sadness and sorrow for the victims of a public tragedy and deal with the fears and insecurity these vicious acts have on society by joining with our neighbors, friends and family who are experiencing similar pain in a similar way. On the other hand, a personal loss of a dearly beloved member of one's family is a pain that is suffered so intensely that it isolates one from everything and everyone by changing one's perspective, philosophy and place in a world suddenly devoid of the love and presence of the loved one that made life worth living. Body and soul are torn apart in ways that cause devastating damage to the life force that sustains the human heart in its journey through this world. For in the end, it is the bereft one who is forced to exist with a broken heart accepting the reality that there is no way to replace the irreplaceable and there is no pathway to attain the unattainable and that the control of one's destiny is a illusion that can be shattered at any moment. Five steps to acceptance and in turn, moving on to a "new normalcy" exists only in the minds of the uninformed!"

To Konigsberg's defense, I do agree that NOT all mental health professionals are up to date on the latest research and findings as it relates to grief and loss care. I saw this first hand at Mattie's hospital and I saw this with the hospice workers who assisted Ann as her father was dying. In a year's time I saw a lot of materials pass before me about Kubler-Ross's model. None of which were helpful because like Konigsberg's article expresses, grief isn't a "series of steps." In fact thinking of it in this fashion can be more detrimental than beneficial, because on any given day I can take one step forward and 10 steps back. I can't judge my progress on these steps, instead, I think grief is more of a feeling, a state of being, and an outlook. Which is WHY it is a psychological construct that is hard to measure, grapple with, and truly understand.

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